Sexology

Sex and Dementia: What Are Our Rights When We’re Not Ourselves Any More?

A recent Bloomberg article recapped an incident in a nursing home in which an employee walked in on two elderly residents, both diagnosed with dementia, having intercourse. The man was in his late 70s, the woman in her late 80s. The employee, a nurse, called for help and separated the two, but not without the woman clawing and screaming at them.

It’s a delicate subject and the zone is completely gray.

The incident led to the male patient being removed from the home (to his family’s distress) and to the woman’s family suing the nursing home for not protecting her from sex (even though all agreed it appeared to be voluntary).

Many staff members were fired, although several got their licenses back after further examination of the case.

The question that floated back and forth: What kind of consent can be given with Alzheimer’s? And what rights did these older people have, no matter how their relatives felt about their sex life?

There is no policy on sex for all old-age facilities, especially with Alzheimer’s patients. (See infographic below.) Some facilities say they treat the sexual relationship on a case-by-case basis (for example, does it seem consensual, are both people single, do the families mind, etc.). A few places, however, have a very sex-positive policy.

In 1995, the Hebrew Home at Riverdale, N.Y., adopted a policy stating that “residents have the right to seek out and engage in sexual expression.” Their policy considers sexuality as an inalienable right and states that intimacy as good for their patients, whether or not their children approve. As long as it’s apparently consensual and continues to be consensual, Alzheimer’s patients are given the same privacy for sex that other, healthier patients enjoy. In fact, their policy states that “it is the function and responsibility of staff to uphold and facilitate sexual expression,” and in that vein, the Hebrew Home allows sexually explicit materials and patient privacy.

So how do we feel about this? How would we feel about it if we were the patient – no longer ourselves, but still a sentient, feeling human being? Would we want to preserve our marriage vows even if we no longer know we are married? Or even if we are single, would we want to protect the sensibilities of our children?

It may be that among the various instructions we give as we get older (such as “no extreme measures”), we also might want to put in our directives that should we need to be put in a facility for people with Alzheimer’s, that we specify its policy on sex.

Personally, as you might imagine, even if I am not myself, I bet there’s enough of me left to want to be in a place that allows its patients sexual freedom.

Robin Dessel, director of memory and vision care and sexual rights educator at the Hebrew Home at Riverdale, talks about “intimacy rights” and has training for professional and nonprofessional staff. She says: “Everyone is entitled to their personal beliefs, morality and cultural traditions. We are not trying to offend anyone, but we just want everyone here to uphold the sexual rights of the patient and be objective and respectful rather than subjective and judgmental.”

Great pains are made to make sure that the patients are happy with their sexual choices. The staff watches them closely to make sure they are calm and enjoying their relationship, as opposed to crying or acting agitated.

Of course, a patient should have protection from unwanted sexual attention, but I like the idea that even if my brain is in some other state of consciousness, that my basic mammalian needs would be present and possibly fulfilled. I would want this for my spouse if he had dementia, was in a care facility and no longer remembered me.

In fact, I would want this for all human beings, if they so desired. Touching and being touched, being physically aroused and being held all lowers blood pressure, lowers stress and therefore cortisol levels, and promotes higher dopamine and oxytocin levels … all good news for the body, heart and mind. Even a mind that is no longer mindful.

I suppose some people might think that sex without full consciousness is undignified. But I think it is a whole lot more undignified to be monitored for sexual activity and separated if “caught.” You may disagree, and that’s your right. But if you want to be sexual while you are still alive – but not quite yourself – you’d better make plans to preserve your rights ahead of time.